Introduction
Nurses are in a very unique position to be able to enact change. As someone who has had a career as a clinician, educator, researcher and scholar and the Founder of a not-for-profit (NFP), my nursing roots have been the cornerstone of my work and life. I have always identified as a nurse and am very proud of this profession and the opportunities it has afforded me. I believe that the career trajectory of nurses can be diverse and interesting and can take you to places that you never imagined. I was thrilled to be invited to write this editorial, and when I reflect upon my journey there were many lessons learnt along the way. This includes nursing patients on coronary care units in the United Kingdom as well as in Australia, and understanding their experiences across the patient journey.
A pivotal moment in my career was when I was invited to teach at the University as I recall becoming conflicted. At that time there were no fully established Nurse Practitioner (NP) roles to accept the position meant leaving clinical work to lecture at the University, with occasional clinical teaching. Upon accepting, I found it wasn’t an easy transition, as University teaching was still in its infancy. However, I found that I loved nothing more than teaching and was recognised with a University Award for this. Several years later, I had transitioned from my Master and completed my PhD, plus managed to have a child along the way!
I was then approached about another opportunity at Deakin University where I was asked to consider a research/ leadership position at Box Hill Hospital. While I had never seen myself as a researcher, the opportunity to work in a clinical joint appointment role and set up a hospital-based nursing research centre was very appealing. Working with nurses around specific clinical issues excited me, and taking them further through a research lens to find solutions was exciting. The setting up of a centre from scratch, and creating a team gave me the opportunity to believe in myself, be brave and grow and ultimately these skills allowed me to expand into leading other collaborative research centres.
At all points in my career, I have been passionate about heart disease. As someone who has a strong family history of heart disease, combined with a mother who was also a nurse (and used to work in Coronary Care) as well as being a staunch feminist – it’s probably no surprise that my journey into the world of women and heart disease began very early on. It was only when I began researching the topic did I realised the terrible statistics and barriers that women face when heart disease occurs. It is not so widely known that in Australia, we lose one woman every hour to heart disease, that is 24 women die every day (1 in 3) due to something that is 80% preventable (Paige et al., Citation2023). This loss is not only tragic but also unnecessary, and these appalling statistics led me to embark on a mission to make a difference in women’s heart health.
In the early days of setting up the programme of research (as getting funding for this topic was difficult), I would invite honours, Masters and PhD students to join me in making a difference in this area. It soon became clear that the research shows a huge disparity in the way women are treated in comparison to men. Women are under-represented in research studies and encounter difficulties in receiving prompt and accurate diagnosis and treatment. This is a concern that extends to all healthcare professionals, including General Practitioners, doctors, and nurses.
There are many studies showing women are under-diagnosed, receive fewer diagnostic tests (e.g. angiograms), and are statistically less likely to receive a stent. All of these do not bode well so it is not surprising that their recovery rates are worse, in fact, they have a two-fold increase of dying within the first year after a heart attack compared to men (Khan et al., Citation2018). Globally, The Lancet Women (Vogel et al., Citation2021) highlighted all of these issues, plus physiological differences and an important educational gap in symptoms. Women present differently to men, their symptoms include shortness of breath and pain radiating up to the jaw and through to their back to the shoulder blades. This is in contrast to the “Hollywood” heart attack often seen in men, with crushing central pain radiating down the left arm. When the media portrays these (male) symptoms as typical, it is not surprising that women are unfamiliar with what could actually be happening to them. On top of this, it can often be challenging for women to carve out time for themselves, given they carry the burden of family caregiving.
From nurse to activist
In early 2015, after an amazing career working with both academics and clinicians, I made a pivotal decision to resign from my position as Professor of Cardiovascular Nursing at St Vincent’s Hospital in Melbourne. This was one of the most difficult decisions of my career as it was a role I had very much enjoyed. Working with two great research teams (leading the Nursing Research Centre and Co-Director of a Collaborative Research Centre) allowed me to work with amazing leaders in nursing and cardiology, plus other wonderful nursing teams at St Vincent’s. I felt torn leaving behind my colleagues and a team of dedicated individuals. However, I kept in mind all of the women’s stories that had been told to me over the years. One particularly comes to mind, where one woman who said that heart disease had “never been on her radar”, and while I had known this was their biggest killer – what was I going to do about it? The thought of setting up a charity dedicated to women sprang from this conversation.
I then spent a number of months researching and interviewing founders and leaders in the women’s cancer space, many were generous in sharing the things that they would do differently if they had their time again. I really had no idea of what was involved in setting up an NFP but was resolute that more needed to be done to enact change. There were others that lifted me and believed in me, I can recall having a meeting with my wonderful mentor, Professor Noel Bairey-Merz (who by the way works with Barbara Streisand as her ambassador!) and she looked me in the eye and said “Linda you need to do this”. I truly believe that the adversities and difficulties in my earlier nursing career contributed to the tenacity I needed to complete the task
The next rather daunting stage was when I found out that there are over 60,000 registered charities in Australia all vying for funding. Over 25 of these were women’s cancer charities, and a small number of heart-related NFPs but not one that was focused specifically on heart disease in women. There was clearly a gap and the next stage was registering via the Charities Commission, which was complicated and I lost much sleep stressing about how to manage this. Thankfully, one of our trusted advisors introduced me to a lawyer in a reputable law firm. Another side story that I won’t go into here, but I was told by a good friend not to expect a very senior partner at one of the leading law firms to be interested in supporting a start-up. I was thrilled that after presenting my idea to them they were very willing to help and we still receive important support many years later.
One of the things that can be hard (when you are a nurse) is the shift to believing in yourself! I can honestly say that there have been so many instances where I have had serious doubts about what I am doing and where the funding is going to come from but I know in my heart (pardon the pun) that it is for all these women who are still dying to a largely preventable disease.
The challenge and the opportunity
The next challenge I had was how to set up an NFP on a shoestring or as they call it in Business “bootstrapping.” I had minimal resources and had to rely heavily on personal savings in the first few years which was incredibly stressful. I then put myself on a year-long Entrepreneurs course where I learnt so much about how to set up a business, including doing extra courses around marketing and exploring revenue raising such as partnerships. Fast forward a number of years and my journey was transformative as I was fortunate to have the support of a dedicated group of individuals who shared my vision. During that time we created partnerships and received philanthropic and Government funding, but diversifying our revenue streams in the early days wasn’t easy – we still had many hurdles.
No one was more surprised than I when we launched “Her Heart” (https://herheart.org/) and went global within the first 6 months. At one stage there were over 5000 website visitors per month, spanning more than 55 countries and later expanding to over 100 countries. The fact that people from all corners of the world connected with our cause highlighted the universal importance of women’s heart health. This international presence not only increased awareness but also allowed us to build a supportive global community of individuals, advocates and healthcare professionals committed to addressing the issue.
I take immense pride in founding Her Heart and soon learnt that people were interested in my story. In the first year, I was nominated and won a Female Entrepreneur Award, and Her Heart was recognised with the Casey Kinnaird Community Award. Then in 2019, I was honoured to receive the Telstra Business Woman of the Year award, an experience that deeply motivated me. These accolades are not just a reflection of my work but a tribute to everyone who has supported Her Heart in its mission.
Creating innovative solutions
Every day, my motivation is fuelled by a genuine desire to serve our community and address its unique pain points. One of the most significant challenges I encountered (personally knowing a number of Cardiologists) was the overwhelming number of messages from women in search of referrals. Responding to each message individually proved to be unsustainable. In response to the requests, we created an online “Find a Female Cardiologist” (https://herheart.org/find-a-female-cardiologist/) which is a feature on the Her Heart Hub. This online directory quickly gained traction, connecting women with female cardiologists who could address their specific healthcare needs. It is interesting that the research shows that if you have a female specialist or GP then you will have fewer complications and better outcomes.
Another crucial concern we addressed was in response to women asking how they know they are at risk. They wanted a short online survey, which was not overly complicated that would indicate if they needed to be checked out further. A review of all the online risk assessment tools worldwide found that there wasn’t one specifically tailored for women. We could see that there was a gap and we created Australia’s first online risk assessment tool for women. This took into account their unique risk factors, including the different stages of their lives, for women who might have had hypertension during pregnancy or diabetes or for those women who went into peri-menopause. It is user-friendly and employs a simple traffic light system to indicate risk levels, allowing women to proactively assess their health status. Our commitment to actively responding to women’s needs and concerns has been a cornerstone of our work.
Our mission and the urgency of change
The urgency of change cannot be overstated, and I truly believe that it is no longer acceptable for us to stand by while heart disease continues to be the leading cause of death among women. Her Heart was launched to fill the void and address the pressing issue of women’s heart health in Australia. While the statistics for women and heart disease are alarming, there is hope. Heart disease is up to 80% preventable, making it a matter of knowing if you are at risk and doing something about it. Managing risk factors and embracing lifestyle changes requires a shift in perspective, the establishment of healthy habits and fostering awareness to empower women to make small but impactful behavioural changes.
At Her Heart, our mission is to pave the way for a future where every woman acknowledges the significance of heart health, empowering them to embrace essential lifestyle changes and take charge of their well-being. It is equally crucial that health professionals, especially nurses, have heart disease specifically related to women on their radar. Together, through our collective efforts, we hold the potential to reshape the landscape of women’s heart health, ensuring that heart disease no longer claims the lives of our patients, colleagues and loved ones.
Allow me to conclude with a quote from Bryce Courtney that will resonate with many nurses reading this: “The power of one is, above all things, the power to believe in yourself, and the only limits are the ones we place on ourselves” (Courtney, Citation1989).
References
- Courtenay, B. (1989). The power of one. Random House .
- Khan, E., Brieger, D., Amerena, J., Atherton, J. J., Chew, D. P., Farshid, A., Ilton, M., Juergens, C. P., Kangaharan, N., Rajaratnam, R., Sweeny, A., Walters, D. L., & Chow, C. K. (2018). Differences in management and outcomes for men and women with ST-elevation myocardial infarction. Medical Journal of Australia, 209(2), 118–123. https://doi.org/10.5694/mja17.01109
- Paige, E., Raffoul, N., Lonsdale, E., & Banks, E. (2023). Cardiovascular disease risk screening in Australia: Evidence and data gaps. Medical Journal of Australia, 218(3), 103–105. https://doi.org/10.5694/mja2.51821
- Vogel, B., Acevedo, M., Appelman, Y., Bairey Merz, C. N., Chieffo, A., Figtree, G. A., Guerrero, M., Kunadian, V., Lam, C. S. P., Maas, A. H. E. M., Mihailidou, A. S., Olszanecka, A., Poole, J. E., Saldarriaga, C., Saw, J., Zühlke, L., & Mehran, R. (2021). The Lancet women and cardiovascular disease commission: Reducing the global burden by 2030. The Lancet, 397(10292), 2385–2438. https://doi.org/10.1016/S0140-6736(21)00684-X